Man battles health insurer for drug that could save his life

Video: Kevin Dwyer and his sister Martha Weber both have the same strain of cystic fibrosis, the same insurance company, and the same doctor, who requested they each be given a potentially life-saving drug. But in a stunning twist, only Martha was approved. NBC’s Jeff Rossen reports.

The stakes couldn't be any higher: a case of life and death for one man fighting his health insurance company. And this story may make you angry.

We always hear horror stories about health insurance companies denying claims. But some experts say this case could take the cake.

You're about to meet a man who is dying. There's a drug that could literally save his life, but he's been battling his insurance company for more than a year to get it. And there's a new twist in this case that no one saw coming.

Kevin Dwyer can't breathe. He can't even sleep without choking. His condition is so serious, his new wife, Katie, has to help clear his lungs every day.

"What are you afraid of?" we asked her.

"Of him dying," she said.

"I didn't think it would come to this, this fast.," Kevin told us. "It's come down to fighting for my life."

Kevin has cystic fibrosis: a deadly disease clogging the lungs, causing dangerous infections, even internal bleeding. The average lifespan of a patient is 37 years old. Kevin is now 40.

"I'm suffocating to death very, very slowly," he explained.

"Because your airways are closing,"

"And it's getting worse, rapidly," Kevin said.

So why is his sister Martha, who has the exact same disease, doing so well? Her lung function is stable, even improving. "I feel able to hope for the future in a way that I never could before," she said. "It's everything."

And she credits a little pill for all of it: A new drug called Kalydeco that is actually slowing the disease in some patients and, ideally, extending their lives.

But it's expensive: $25,000 a month. So Kevin and Martha, brother and sister, asked their insurance to cover it.

They have the same insurance company: United Healthcare. They have the same mutation of cystic fibrosis. They see the same doctor, who wrote the same letter to United: that both will likely "benefit from treatment with Kalydeco." But in a stunning twist, Martha was approved and Kevin was denied.

"Have you said to the reviewing company, 'You already approved my sister. What do you mean you're denying me?'" we asked.

"That was part of my appeal, I sent in a copy of my sister's review," Kevin explained. "I let them know. I said, 'You've already approved this. We sent in the exact same information. Here's the information again.'"

"What was the response?"

"Denied," Kevin said.

In fact, Kevin was denied four times. The company's reason: Kalydeco is not FDA-approved for his mutation. But remember, Martha has the same mutation, and she got approved, her reviewer saying the drug is "medically necessary" while Kevin's reviewer said: "Not medically necessary."

Healthcare advocates like Elisabeth Benjamin, vice president of health inititatives, Community Service Society of New York, say the system is broken. "It's too random," she told us."It can't be like Russian roulette."

"So what needs to happen here?" we asked.

"There needs to be more transparency, more accountability," Benjamin said."It shouldn't be luck of the draw."

And now time may be running out. Two years ago, Kevin was a model of fitness. Today he can barely make it up a flight of stairs.

"I want to live to the end with him," Kevin's wife Katie said. "And I certainly don't want him to leave me."

"If I don't get this medication, I don't know what other options I would have," Kevin said. "It is completely life and death."

We contacted United Healthcare for comment on our story: Why were they denying his claim? And we got action. United Healthcare did a complete reversal and has now approved Kevin's claim, due to the "unique circumstances" of his case. So he's finally getting the drug.

"I'm ecstatic obviously, and (there is) a big sense of relief,'' Kevin said in a live appearance on TODAY Tuesday. "This was a long, stressful battle."

When Kevin received the life-changing phone call that his claim was approved, he reflected on all those who helped push for it to happen.

"There was a moment after I hung up where I sat stunned in silence and then I just cried,'' he said. "All these emotions, joy, relief came out. This was a big effort."

"When we received the call that Kevin was going to be getting this drug, many of the fears that I had for our future were lifted a great deal,'' Katie said on TODAY. "I feel as though now we can really start getting excited about our future."

The couple appeared on TODAY along with Kevin's sister, Martha, who knows the beneficial effects of the drug after having taken it herself.

"It took so much work,'' Martha said. "We did so much research before we even submitted the first claim, and we knew that his drug would help us especially when I got the drug and started taking it and knew how much better I felt. Kevin just had to keep fighting."

Kevin said he expects to start taking Kalydeco starting on Wednesday.

"In two weeks, I had noticeable improvement in my lung function, but within days Kevin will feel a difference in the way he can clear his lungs and the energy he has,'' Martha said. "He's going to feel it right away."

Statement from United Healthcare:

“We cover gene therapy where it is FDA approved or where an independent expert deems it medically necessary, as we did for Ms. Weber. Although two independent medical experts in Mr. Dwyer’s case agreed with FDA guidelines that Kalydeco gene therapy is only proven effective for a gene mutation that Mr. Dwyer does not have, we will support his request due to the unique circumstances. Gene therapy is a complex and fast evolving field, and we base decisions on medical facts while maintaining a sense of compassion.”

Statement from MCMC, the independent medical appeals company that granted Martha the drug but denied Kevin:

“MCMC provides independent reviews of medical claims. These reviews are conducted by highly qualified and board-certified physicians and address a variety of issues including the medical necessity of the treatment in question. In conducting these reviews, the physicians use peer reviewed literature and prepare a clinical assessment of the patient’s medical record. With respect to medical necessity reviews, the reviews conducted as part of the process established by the State of New York Department of Financial Services (“NYDFS”) entail the use of a broader definition for what is considered "medically necessary" versus reviews conducted for some health plans. In medical necessity reviews conducted on behalf of health plans, the reviewer typically considers issues such as the health plan language and whether or not the treatment is FDA approved. MCMC does not disclose confidential information regarding individual claims reviews. However, the two cases in question were reviewed under different protocols (NYDFS review in one instance, Health Plan review in the other) for two patients with the same disease, but with different case histories. Those factors, along with the fact that the FDA did not approve of the treatment/drug in question for their specific disease, resulted in different outcomes in these two cases.”

Many states have consumer assistance programs that can help you file health insurance appeals (free of charge) , and fight health insurance denials. For more info, click here.

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